Ask HN: A friend has brain cancer: any bio hacks that worked?
156 comments
·January 9, 2025ausbah
I know when someone’s faced with certain death they’ll do almost anything they can to survive if only for a little bit longer, but this thread full of personal antectodes and largely non-reproduced effects from random pubmed articles is the hackernews equivalent of essential oils or smth
nikisweeting
OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
kerkeslager
I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it.
Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
_DeadFred_
↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance.
Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in.
https://www.who.int/news/item/07-02-2000-world-health-organi...
lambdaphagy
My impression formed from my time in cancer drug discovery is that bro science is, within practical bounds, a perfectly reasonable option for one arm of a comprehensive plan for treatment.
A lot of things that sound like bro science are actually broadly supported in the literature. But studying this stuff is hard because of all of the usual issues with human subjects, the less than complete reliability of our epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not?
If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.
_DeadFred_
Every single person I know who died from cancer young went down this route, from trying weird cures to going and seeing John of God in Brazil. Zero cured or delayed the cancer. All delayed acceptance and GREATLY regretted wasting that time and wishing they had had more time in the acceptance phase not the 'this can't be real' 'I can't die' 'There has to be something' denial.
This can and does hurt them, and is cruel. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.
hsuduebc2
I love that someone asks for advice. Even for individual experience because he is miserable and some people are basically like "Nah just die. It would be uNeThIcaL."
lambdaphagy
To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication.
This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science.
Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
7e
The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise.
Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.
7e
It's false hope, swallowed hook line and sinker.
ibash
You should ask them if they want you playing doctor.
I have a chronic disease, not fatal, and totally manageable. But the most annoying thing is when someone finds out and suddenly pretends to be the expert.
Of course my doctors and I investigating it for years were completely wrong! I should’ve ate more apricots!
Please just check with them if they want their limited time spent like that.
ionwake
dont get why that upsets you. I have had a chronic disease my whole life and one of the people who offered help completely saved my life.
If anyone else told me to eat apricots Id be grateful for their time and attention.
I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
Sorry I just have rarely seen my friends or family offer any advice.
- Back to OP, Ive always remembered Paul Stamets recommending the stamets-7 mushroom blend with research papers talking about recession. no idea if it works.
OPisntauthority
Not everyone wants to be reminded of their situation or turn major aspects of their life into a struggle.
serf
first: the person who doesn't want to be reminded is probably not the person that is approaching you and actively telling you that they are approaching the end of their life.
second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.
RIMR
The problem is that when you are trying to accept your fate and come to peace with it, and everyone else around you is trying to give you false hope. It's hard to break free from the constant futile wishful thinking if everyone around you is doing it for you.
Sometimes you should just let people work with their doctors and come to peace with their situation.
If I was dying of cancer, and someone told me to eat apricots, I might shove the apricots down their meddling throat.
scotty79
It can be bit annoying because people people think "can't hurt to try" but there's thousand unfounded things to try, little time, no way to pick and some of them could hurt. There's no harm in listening to ideas, being expected to implement them is another thing.
kens
> I should’ve ate more apricots!
Did you mention apricots deliberately? Apricot pits were a huge, huge alternative medicine in the 1970s under the name Laetrile. Proponents said that Laetrile would cure cancer and was being covered up. The FDA banned it, saying that it accomplished nothing other than potential cyanide poisoning. Meanwhile, tens of thousands of patients a year went to Laetrile clinics in Mexico and spent tons of money on it. Laetrile was smuggled into the US from Mexico, second only to marijuana. Enthusiasm dwindled after studies failed to find a benefit. (Just some hopefully interesting history about apricots.)
A news article from the time: https://timesmachine.nytimes.com/timesmachine/1977/11/27/939...
alecst
I'm really sorry to hear that. Since you're asking for moonshots and weird things to try, here's something they can ask their doctor about:
> Case reports involving glioblastoma patients using water-only fasting regimens in conjunction with other forms of cancer treatment have reported favorable outcomes with respect to tumor growth https://pmc.ncbi.nlm.nih.gov/articles/PMC2874558/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5884883/
GIFtheory
Exercise can supposedly help outcomes for some types of cancer—-I wonder whether the mechanism is similar to that of fasting. The supposed mechanism AIUI is that exercise makes less glucose available to the tumor. Podcast with more info here: https://overcast.fm/+6j6rLbfGM
fcanela
I have a relative with glioblastoma who could see his granddaughter born if he extends his life a while. Thanks a lot for sharing!
alecst
You're welcome. I read a lot about fasting and I have a lot of experience with it. It's helped me, personally, heal many things (but not all of them -- it's good to have low expectations.) In any case, it's a mind-expanding experience to go without food for a while, regardless of the outcome.
thomasfromcdnjs
I'm one of those stubborn types that will refuse all medical treatments, lots of fasting is my current go to strategy if some tumor gets out of control.
znpy
There was an episode from “diary of a ceo” (don’t let the title fool you) where a scientist was making similar remarks:
I wouldn’t usually post these kind of things, but since OP is asking for moonshots i’ll take a chance.
Best of luck to your friend!
d--b
Thanks
cj
My best friend died of brain cancer.
Although not from the cancer itself. He died of an opioid overdose. He was prescribed pain killers for cancer-related pain, and got hooked. His doctors stopped prescribing, so he found it elsewhere, and got a bad batch with fentanyl. (He was a VC living in SF, well to do, he had all the treatment money could buy, but cancer ended up not being what killed him)
I know this isn’t what you’re looking for, but be sure to not ignore other parts of his health. Addiction and other disorders are common among people with terminal or not-so-great prognosis.
The most you can do is to be a great friend.
stickfigure
> Addiction and other disorders are common among people with terminal or not-so-great prognosis
It's horrifying that we don't just give them what they want. Who are we to judge?
nick__m
Stopping opioid because a cancer patient is addicted is incredibly cruel! sorry for your lost.
paulpauper
Addiction and other disorders are common among people with terminal or not-so-great prognosis.
Or maybe his death was an outlier .pain meds are well tolerated by most people.
geuis
Keto diets seem to have at least a positive anecdotal effect. Putting aside the cancer part, a strict adherence to the caloric restriction diet has general health benefits. Whether the positive health benefits impact the cancer itself is unknown. It may simply be that being healthier helps patients deal with the impacts of chemo and radiotherapy.
Also possible is that caloric restriction helps to put the body into a biology mode that helps to combat cancerous tissue.
There's no solid science behind any of this, but generally being healthier helps with any medical treatments.
sirholmes
Look at MDAnderson in Houston.
https://www.mdanderson.org/cancerwise/glioblastoma-survivor-...
https://www.mdanderson.org/cancerwise/how-i-knew-i-had-a-bra...
Along with other success stories, they helped my sister with a particularly lethal form breast cancer in one of their clinical trials.
Also - If your friend is approved and needs a place to stay, let me know. Know a couple of people who help house people who are getting treatment here.
You’re an amazing friend and I hope your friend gets the care they need
aCameronhuff
Here’s a summary of all of the current treatments and near future treatments for GBM/glioma: https://docs.google.com/file/d/1kTa3eamaL91Smjh9r_0CYv5OYFX4....
This is as complete a list as you’ll find, written in plain English, with citations for every part of it. Slightly out of date but there hasn’t been much that’s new and different since last year. Vorasidenib was approved recently in USA and it’s the most effective IDH inhibitor - worth reading more about.
The document is focussed on glioma but there’s a lot of GBM research. Unfortunately the short answer is that there is no cure and there is treatment that might be a cure under development. There are treatments that slow the course, and the patient’s doctors know all of them and they will recommend what’s best. This is an area of medicine that is hard for amateurs to learn about, and a neurooncologist has decades more training than their patients. The reality is this is a horrible disease that currently has no cure - and the treatments that work are all complex medicines prescribed by specialists.
zblevins
I have heard some people having luck by switching to a ketogenic diet. Here’s a paper I could find on PubMed about this. Sorry to hear about your friend.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9504425/
Edit: I am not a doctor. My wife is a physician and I spoke to her before posting this.
jawilson2
This. It is very dependent on the type of cancer. There is a lot of research on this. For a little context, I was a pediatric neurology professor for a while, and have been on a low carb diet for a decade. Much of the department did low carb, as did much of the oncology dept. Many kids with epilepsy are put on keto as well with great effect. I did a deep dive into low carb research before starting and keeping with the diet, and found a lot about using it for cancer therapy. I'm not sure what has changed in the last 10 years, but the above abstract looks promising. With a GBM, they probably don't have much to lose. *This is not medical advice, I'm not an MD (I was a BME doing epilepsy research), have them check with their Dr.
droideqa
The keto diet was actually developed specifically to help people with epilepsy[0].
[0]: https://epilepsysociety.org.uk/about-epilepsy/treatment/keto...
adamredwoods
If diet could stop cancer, we'd be done by now. I guarantee every cancer will mutate to overcome any change in diet you can throw at it.
stickfigure
All cancer treatments are probabilistic. There are no cures, just interventions that increase survival rates. There are no honest sentences that begin with "every cancer".
adamredwoods
There is no diet that will even intervene with cancer, unless the patient dies.
Cancer is the patient's own cell that has mutated to a point beyond apoptosis and adapted to be able to draw nutrients from cells around it. It started from just one cell. It has already evaded dietary fluctuations and adapted.
Dansvidania
I wish I had something better to add, but I can add an anecdotal +1 to this.
A relative went keto pretty hard after a bad diagnosis and they are still going strong. As far as I understand it, cancer cells can only function on glucose.
olieidel
+1 on this. I did my thesis on Glioblastoma-related imaging stuff [1]. The state of the art at the time (~2016) was that, realistically, none of the current treatments were "great", unfortunately. In short, you have 1) surgery, 2) chemotherapy, 3) radiation. Those treatments did extend survival in studies, but the overall survival of Glioblastoma patients was (tragically) still very bad at 12-24 months, and none of those therapy options were a cure.
As a side note, I recommend the book "Being Mortal" from Atul Gawande. The TLDR here is that our healthcare systems tend to overtreat patients, especially those with cancer who actually have a rather bleak prognosis, because it's easier for a physician to simply order all treatments and tell the patient "all good here, good luck" instead of taking the time to sit down and have a (long) conversation about the bleak prognosis and which options are actually still worth it. By "worth it" I mean that there are trade-offs to each treatment option, and it takes some very careful weighing whether each one provides a net benefit for your friend's individual situation. E.g. surgery might extend survival by X months, but might also create, worst case, new disabilities. So now you're faced with the very difficult decision of whether to potentially live for a shorter time with less disabilities, or for a longer time with more. There's no perfect answer, but having this sort of discussion is a good step which many patients unfortunately never take. I think this is a failure in our healthcare systems and maybe in the education of physicians.
Now, if I personally had a Glioblastoma, on top of the standard of care (surgery probably makes sense etc.), I think the ketogenic diet would currently be my best shot. Yeah, sure.. it's mostly only case reports so essentially anecdotal evidence, but it does look promising.
Good luck for your friend!
[1] https://scholar.google.com/citations?user=tinu7tYAAAAJ&hl=en
d--b
Thanks a lot, I hadn't seen this. I'll read through.
mixmastamyk
While we're thinking about it, Vitamin D3 and K2-mk-7 are known to be helpful in that regard.
myphone8356
Not an expert or doctor disclaimer.
Sugar is the food cancer cells crave. Not a miracle cure but restricting sugars may help reduce the growth of the tumor.
hombre_fatal
I'm pretty sure that's an old myth that sugar preferentially feeds cancer cells and that you somehow starve them by reducing sugar intake. After all, the body maintains stable blood glucose levels regardless of how low your sugar intake is.
e.g. https://news.cancerresearchuk.org/2023/08/16/sugar-and-cance...
jo6gwb
Google Richard Scolyer: Top doctor remains brain cancer-free after a year. A year after undergoing a world-first treatment for glioblastoma, Australian doctor Richard Scolyer remains cancer-free.
Check out Sonalsense - https://www.sonalasense.com/for-patients. Requires specialized machine not in US as of last year.
Dr Mitchell Berger out of UCSF is the GOAT.
klipt
Scolyer is in the relatively fortunate position of being a world class cancer researcher before getting cancer, so he had the resources of an entire oncology lab to give himself a speculative treatment.
femto
Best hope in this regard is to keep an eye out for a resulting clinical trial, unless you have access to a friendly cancer research lab that wants to replicate the experiment.
ChrisMarshallNY
Damn. Sorry to hear that.
I have had two friends get it, and neither made it. Another died of it, but it metastasized from their lung (Yeah, I have known a hell of a lot of people with cancer. Most have survived).
If you have known 4 people with the same cancer, they call that a "cluster," in the vernacular, and it might not be a bad idea to see if you can figure out where it comes from.
Here on Long Island, we have numerous breast cancer clusters. I am pretty cynical that people know the cause, but don't want to deal with it.
I had a serious non-cancerous tumor, back in '96, but managed to learn to walk and chew gum again, after a couple of months.
The key is whether or not it's operable. Mine was, none of my other friends were operable.
rappatic
> I am pretty cynical that people know the cause, but don't want to deal with it.
I looked up "long island breast cancer" and saw a long list of risk factors. Out of curiosity, did you have a specific one in mind?
droidist2
Long Island is a very dense with overhead power lines, but then again look at Tokyo.
IAmGraydon
The occurrence of GBM is about 3 out of every 100,000 people. If you happen to know 4, is there some commonality? Do you all work together in the same industry? Do they all live in the same town?
deegles
My aunt is in her 70s and has 5 friends currently with cancer. My belief is that it's downstream effects from Covid wrecking people's immune systems and their ability to naturally fight cancer. Time will tell.
dekhn
Bayes and Occam would suggest otherwise. If you're in your 70s in the US it's likely many people you know have cancer (unrelated to COVID). Especially now, given that detection is better than ever and more people are surviving longer with cancer.
MichaelZuo
Even more so, Probably 100% of the population over 70 has cancer in the sense of a clump of abnormal cell divison, just that for a lot of them it’s so slow growing or in a benign tumor that it doesn’t get discovered or treated.
Loughla
Not even thinking about environmental factors then?
throwawayffffas
I was about to say this knowing 4 people with GBM means there is something in your environment causing this.
I am sorry about your friends.
d--b
No it's so weird, no connection at all between any of them.
georgeburdell
Military? Glioblastoma is correlated to military service in the First Gulf War
lithocarpus
All four have the same kind of brain cancer? Or just have some kind of cancer?
joeyrideout
I recently listened to this Diary of a CEO podcast episode [1] discussing the potential link between blood glucose from carbohydrate-heavy diets and cancer. It is an alternate metabolic theory of cancer, and the podcast guest claimed that fasting followed by a keto diet was showing early success as an intervention for cancer patients (as an addition, not a replacement, to existing standard of care). I have not seen the data nor do I know the sample size, but the discussion convinced me to rethink my carb intake.
A friend recently got diagnosed with stage 4 GBM. It's the 4th person I know who has it, and it's getting old, so I want to help, bio-hacking style.
I stumbled upon these guys who built a helmet that rotates strong magnets to create oscillating magnetic fields in the brain. They claim the oscillating magnetic fields cause cancer cell death through mechanisms I don't understand at all.
https://www.nature.com/articles/s41598-023-46758-w
Did anyone try to build one of these?
-- Other avenues:
1. taking vortioxetine
https://ethz.ch/en/news-and-events/eth-news/news/2024/09/ant...
2. getting infected with the zika virus (probably the best thing to do IMO)
https://pubmed.ncbi.nlm.nih.gov/37324152/
https://pubmed.ncbi.nlm.nih.gov/33002018/